The doctor will tell you what is good for you…

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As those of us whose lives involve far too much CBeebies know, a new programme aimed at toddlers called ‘Get Well Soon’ has hit our screens recently. Starring the not unattractive Dr Ranj, and a group of puppet toddlers, Get Well Soon explores common childhood illnesses and health issues. It’s great. During one of the multiple times this was on in our house this week (damn you/thank you Virgin On Demand) the theme song became a permanent fixture in my brain.

Be happy, be healthy and get well soon
‘Cos the doctor and nurse, they know what to do (They do!)
They’ll always take good care of you.

Be happy, be healthy and get well soon.
The doctor will tell you what is good for you.
Be happy, be healthy and get well soon.

It’s those middle lines that jumped out at me. It is what we mainly want from the NHS: we’re ill, we need it sorting, we want someone with expertise to fix it. We’re lucky to have one of the world’s best health systems, we’re proud of the NHS and rightly so.

For some people it’s a bit more complicated though. If you have a long term condition that makes a big impact on your day to day life it’s more difficult for the NHS to support you well. Medication may make a big difference, and some therapies will help but ultimately the doctor can’t cure you. You’re the one trying to live as best you can with it every day. This is not easy –  maybe your health stops you working, makes you more dependent on your family than you want to be, and prevents you from getting out and about. All this will drag you down and further damage your emotional and physical health.

This is a challenge the NHS is trying to rise to, but it can’t do it on its own, and many of the shared care planning approaches being introduced recognise this. These tap into your own expertise about your life and how your health condition affects it. Together with the clinical advice of health professionals you come up with a plan that feels like its yours, not the doctor’s.

Personal health budgets are the version of this I know most about. The added component here is that you get to understand how much money the NHS has available for helping you stay healthy and maintain your well-being, and the plan says how this will be spent. Knowing the money is important because it frees you up to come up with solutions that are outside what the NHS can traditionally offer. It also means that the conversation between the person and the health professional is different, more equal.  So it’s not (all) about the money, but this component of the idea is fairly critical.

The final evaluation from the Personal Health Budget pilot programme is due out soon. Results from anecdotal reports, plus the interim reports already published show that this could work for people.

One of the videos on the pilot programme’s website feature Anita and Trevor from Hull, who were struggling to cope with the effects of Anita’s Huntington’s disease. They say how the original solutions the NHS was able to offer, such as going into a nursing home, or having agency staff coming in to help with bathing, just wouldn’t have worked. By coming up with other ideas based on what Anita liked, and by having control over who did come in to help, Anita is happier, and Trevor feels much less stressed.

There’s also an interview with David, who was able to make a relatively small change to the way the NHS supported him, that has meant he is able to get to work on time.

These people still needed their health professionals to help, but in different ways, and on different terms.

So Doctor Ranj, (and your colleague Nurse Morag) you’re still needed. But as part of a different conversation.

And anyway, you sing songs for toddlers about constipation. That’s a big deal in my house. So you’re still my hero.

If you’re going to do it…

You know the best thing about the Personal Health Budgets evaluation? No, no, not that its the biggest control trialled research on the subject internationally. Nope, not that it showed that personal health budgets resulted in better outcomes for people. Not even that it showed that they reduced use of other health services, or were cost effective. (But they were good answers, well done.) It’s that it identified the components for success, that if you implemented them in one way people get the benefits, and introduced in a different way, they are not worth doing. It’s 160 pages of thorough detailed academia, full of means and medians, ‘bootstrap analysis’ and scatter graphs that make my head spin, but somewhere in there it just about says, in smooth George Michael tones:

“if you’re going to do it… do it right”

This is gold dust. The individual budgets evaluation, which was taking place as personal budgets were introduced in social care, did alot of useful things, but it didn’t do this. In its quantitative analysis it reported on results from the 13 pilot sites as if they had all taken the same approach. This would have been just the ticket if personal budgets were a straight forward ‘intervention’ that could be introduced identically everywhere, rather like a new pill developed in a lab. But of course, it’s not that simple to introduce personal budgets. Both pilot programmes have started with the majority of sites at a standing, or near-standing start, and have not been too prescriptive about how or even what to set up. They were all driven by different people, differently. Each experienced the usual setbacks and resistance, breakthroughs and flashes of inspired leadership. That’s par for the course when trying something very new and potentially radical in a pressured and complicated environment. 

So while the individual budgets evaluation gave us a wealth of helpful information, it was even more valuable that the personal health budgets research was able to dig down a bit deeper. And the most important factors in whether a personal health budget worked well? That people knew the budget upfront, had flexibility in what they could spend it on, and could choose how it was managed. Not giving people real choice and flexibility over what the budget could be spent on actually resulted in worse outcomes for budget recipients than the control group.

This doesn’t seem like rocket science, but, as the varied roll out of personal budgets in social care shows, you can be pretty sure that it will be these things that will be under pressure as personal health budgets do become more widespread. And if the pilot programmes were bumpy rides, then making them a mainstream part of NHS provision is fraught with potholes, potential wrong turns and dead ends. 

The research report also matched the way personal health budgets were implemented with the attitudes and organisational values of those piloting them. There are a number of different ways to conceptualise personal health budgets, and these will affect decisions about how they are introduced. At one end of the spectrum they can be seen as an extension of shopping – a way for people to exercise more choice and use their consumer clout to buy different stuff. Or they can be seen as a way to give people a chance to think more broadly about the ‘natural wealth’ in their lives – their strengths, opportunities, relationships and communities- as well as their budget. They can use all these together to decide what outcomes matter most to them and make changes that maintain their health, or lessen the impact of ill health. The latter requires a more transformational change in the way services and health professionals work with people, and an implementation strategy anchored in principles and values, as well as the necessary process change. But, strong indications from the personal health budget evaluation, and our learning from social care, tells us that this is the route to getting good results. 

As stories like Pete and Michelle’s show, personal health budgets can make a tremendous improvement to a family’s life. But a change rooted in values and new ways of thinking is difficult to achieve, isn’t it?

One thing that is helpful here is the policy position – from April 2014 people in receipt of NHS Continuing Healthcare funding will have a right to ask for a personal health budget. And the government’s mandate to the NHS Commissioning Board sets out a 2015 commitment for people with long health physical and mental health needs who would benefit to have this option. There’s nothing to stop CCGs doing this earlier, and some of the more leading edge places are voluntarily making them available now.* The fact that personal health budgets will be demand led, by people who want them, or by those areas who are genuinely committed to them, should help ensure that they don’t become target- or top-down driven.

The other thing that project managers in some of the advanced sites are finding well worth investing in is the leadership of people getting personal health budgets. A growing number of the projects have set up peer networks. The groups help them steer their projects, begin to build support networks for future budget recipients and serve as allies in explaining what its all about and making things happen. 

There is a vast amount of change and restructuring happening throughout the NHS at the moment, particularly amongst managers. The one constant in all this change is people who need support from the NHS and their families. It makes sense that if we’re anxious about the innovation getting corrupted, and losing its values and vision, that it is held and protected by the people who have the biggest stake in the way the system implements it. In Wham!’s own version of ‘nothing about us, without us’:

“if you’re going to do it, do it right, right…do it with me”

  

 

*its already lawful to offer a personal health budget approach using a 3rd party or notional budget, and when proposed legislative changes being consulted on now comes into force, everywhe will have the power to make direct payments. Places who were part of the pilot programme may already have these powers.

Are we human…?

This week a spotlight has shone on the NHS at its worst.

A recurring theme, in both the NHS’s failures, and its most innovative and inspiring practice is how we inject humanity back into organisations and care. This is as true for community as buildings based services. To rise to the challenge health services need to respond to more than just medical needs, and to recognise patient as well as professional expertise. Its easily said but less easily done.

In the context of personal health budgets, reinstating the human touch can be transformational. I am struck by the number of times people for whom personal health budgets have worked well tell me ‘it means I can be a mum/dad/partner/daughter again’. Their illness or condition came to dominate their lives. Through being able to co-design their support with professionals, as equal partners, they got back something of themselves they thought they had lost.

Its a sad fact that health services can get in the way of people and families functioning at their best. At the moment, my colleagues and I are running events to share what we have learnt from the personal health budgets pilot. Jo Fitzgerald has been opening them. Each time I hear her speak about her experience as Mitchell’s mum, I hear another detail about their lives – as they used to be – that shocks me.

With round the clock support necessary for Mitchell, the intrusion on the family’s lives can only be imagined by those of us who have not experienced it. The rhythm of their life was set by staffing policies that confined them to tight geographical boundaries, and shift patterns that meant that everyone always had to be home for 3pm in order to do handover. It would be difficult to just do the normal things that regular families do with those kinds of restrictions. And this is before the silly stuff – like the policy that meant that Mitchell had to be formally identified and this witnessed before his medication could be administered. As Jo points out the likelihood of someone climbing in the window and inserting a trachy tube to pretend to be Mitchell was small.

Obviously not everyone’s experience of this kind of health service is so problematic… but for many people with high health needs, the nature of the support itself can have some unfortunate side effects.

Being able to put Mitchell at the centre of things, and organise his care around his specific medical needs but also his relationships, personality and interests has made a massive difference. A difference not just to him and his family but also the staff paid to support him – who have stuck around much longer than used to be the case.

It is difficult, especially in these cash strapped times, for health services to be seen to spend their budgets on anything other than pure clinical care. We’ve all seen the headlines. Drum kits, season tickets, ipads… Where people are given the chance to think broadly about how to meet ‘health and well being outcomes’, the results can be great.

In the personal health budgets pilot evaluation people who had a significant amount of money spent on them were given more control over how it was spent. They decided to spend a greater proportion of it on non-clinical services than commissioners would have. What happened? They managed to maintain their health on a par with the control group who were receiving traditional commissioned services. Not only that but they used less of other health services. For example, they needed to go into hospital less. All while increasing their ‘social care’ outcomes and psychological well being. In layperson’s terms, I reckon, this means they ‘got a life’.

Is it the role of the NHS to pay for things that aren’t solely medical? I think it is. Whether its ‘compassion in nursing’ ‘dignity in care’ or ‘developing person centred organisations’ – at the heart of these initiatives are attempts to tap back into what really matters, and is often simple, true and powerful – our uniqueness, interconnectedness and belonging in our communities.

“As we start in our working lives we often have a more human gaze – as our knowledge and experience increase we adopt a more medical gaze – as we realise the complexities of life and illness and the difficulties people face… we seek to redress that balance”

From training presentation for health professionals on the Health Foundation‘s self management resource centre

“If someone else had chosen the exact things stated in my budget, it wouldn’t have had the same impact on my life; Its the fact I’ve thought about and chosen for myself. I’ve taken back control and purchased back, if you like, the self-worth I thought I’d lost forever. My life now isn’t about how I feel, but about what I can do next!”

Sandie, from Norfolk pilot, in a talk. See her video here

Personal health budgets and their evil twin

Like every good comic book hero, personal health budgets have an evil twin. There are personal health budgets as they have been developed through the pilot programme. Then there are personal health budgets as described by people who are, lets say, less than convinced about them.

These ‘evil twin’ personal health budgets involve everyone being given a lump of cash to spend on whatever takes their fancy, and left to fend for themselves. What happens when the money runs out? Obviously that’s it, your money is spent on crystal healing and holidays to the Bahamas and the NHS will have no more to do with you.

The reality, as ever, is less exciting, and more complicated.

Personal health budgets have been trialled primarily with people with ongoing health conditions, with the evidence showing that they’re most effective for people with the highest levels of need. So they’re not for everyone. They are voluntary. People plan, with help if they need it, how the resource can help them meet health needs or outcomes that they’ve agreed with the NHS. They plan in the context of their whole life – which will of course include their family, friends and communities. They might choose services the NHS already provides, as well as things it doesn’t. The plan needs to include good consideration of any risks, and to contingency plan for the kind of occurrences that may happen (eg if someone has a relapsing condition, what happens during a relapse). This is all signed off by NHS staff, who need to agree that the proposals could achieve the outcomes they’re supposed to.

The money can be paid directly into someone’s bank account as a direct payment, but it can also be spent through the NHS, or by a third party. Where it’s a direct payment, generally this is paid in instalments, most usually monthly. Most areas have direct payment support services set up through their Local Authority, which help people to manage their money. There is very little evidence of fraud, either in the pilots, or in the wider use of direct payments in social care. People should be supported to review their care regularly anyway, and all direct payments are financially monitored. So the chances of someone blowing all the money`is not that high.

If someone’s needs change, their budget would be reassessed. If the plan is really not working out, they can go back to traditional services.  No-one would be denied the NHS care they need on the basis of having a personal health budget. So that’s that. Told you it wasn’t exciting.

So, lycra-clad superhero, or goatee bearded doppelganger? As with any caricature, the truth lies somewhere else. The final evaluation report from the pilot programme told us that personal health budgets could improve the lives of thousands of people, but implementing them successfully will be hard work. They are a massively counter cultural innovation that will require real leadership at all levels. They’ll need smart, responsive implementation strategies that don’t lose sight of the experience of the people they’re for, costs and outcomes, and the actual (as opposed to imagined) challenges that lie ahead.